Predictive genetic testing for hereditary non-polyposis colorectal cancer:Uptake and long-term satisfaction

The aim of this prospective study was to assess the uptake of predictive ge netic testing for hereditary non-polyposis colorectal cancer (HNPCC) and it s associations with sociodemographic and other factors, and long-term satis faction with taking the test. The test was offered to all high-risk members (n = 446) of 36 Finnish HNPCC families in which the mutation was known. Th e procedure comprised an educational counselling session, a period for refl ection, and a test disclosure session. Data were collected by questionnaire s sent before the educational counselling and 1 month and 1 year after the test disclosure. Of those eligible, 85% (n = 381) completed the first quest ionnaire study. Non-participation was more common among men living alone wh o had not participated in the clinical cancer surveillance programme. Of th e 347 subjects who attended counselling, 334 (75% of all subjects) were act ually tested. After logistic-regression analysis, the only significant fact or predicting test acceptance proved to be employment status: those employe d were more likely than others to accept the test (odds ratio = 2.25; 95% c onfidence intervals, 1.09 to 4.61). At follow-up, over 90% of the subjects were fully satisfied with the decision to take the test. In conclusion, acc eptance of the test was considerably higher than in previously reported stu dies. We attribute this to our careful face-to-face individualized counsell ing, our health care system, and to attitudes of the Finnish population, wh ich are generally favourable towards health care and disease prevention. (C ) 2000 Wiley-Liss, Inc.